NORD (National Organization for Rare Disorders)
Business Profile
Core Value Proposition
NORD provides education, patient assistance programs, clinical care resources, research support, and policy advocacy to improve the health and well-being of people with rare diseases.
Target Customer
Patients with rare diseases and their caregivers, clinicians and researchers, patient organizations, healthcare policy makers, and donors/partners involved in rare disease advocacy and support.
Key Differentiator
A holistic, nationwide ecosystem that combines patient education, direct support (including financial and travel assistance), centers of excellence, research registries, and policy advocacy within a single nonprofit platform; with a long history (since 1987) of pioneering patient assistance programs.
Implementation Timeline
Value can be realized immediately through access to information and helplines; tangible program benefits (e.g., financial assistance, travel support) typically implemented within weeks to months depending on program eligibility and resources.
Pain Points
- 1Difficulty accessing affordable medications and navigating insurance/claims for rare diseases
- 2Limited access to specialized clinical care and multidisciplinary expertise
- 3Fragmented information and resources for patients, caregivers, and clinicians dealing with rare diseases
Key Features
- 1Patient Assistance Programs (drug, co-pay, travel/financial support for clinical trials and care)
- 2NORD Rare Disease Centers of Excellence (coordinated multi-specialty clinical care)
- 3IAMRARE Program (patient registry to assist researchers) and Rare Disease Cures Accelerator (RDCA-DAP) involvement
- 4Education and awareness resources including RareEdu, Rare Disease Day materials, and Living Rare, Living Stronger events
- 5Policy and advocacy through Rare Action Network, policy statements, and government engagement
Target Customer Industries
Decision Makers
- 1Executive Director
- 2CEO
- 3Director of Programs
- 4Policy Director
- 5Grants Manager
- 6Medical Director
- 7Patient Advocacy Lead
Client Results
- 1Improved patient access to medications, diagnostics, and clinical trial opportunities
- 2Increased coordination of care through a national network of centers of excellence
- 3Enhanced research progress via disease registries and funding programs
- 4Greater policy influence and funding for rare disease initiatives
- 5Ongoing education and support for patients, families, and clinicians
Competitive Advantages
- 1Comprehensive, centralized resource hub for patients, clinicians, and researchers
- 2Longstanding leader in patient assistance and access programs since 1987
- 3 nationwide network of Rare Disease Centers of Excellence
- 4Structured research and data collaboration (IAMRARE, RDCA-DAP)
- 5Active policy/advocacy platform (Rare Action Network) and broad partnerships
Key Benefits
Case Studies & Success Stories
Living with a Rare Disease: Patient Testimonial on Financial Assistance
Ana, a patient with a rare cancer, describes how NORD's support and foundation assistance provided critical financial relief during the pandemic, highlighting the impact of access programs on patient well-being.
Additional Product Information
Product Description
A national nonprofit that advances education, patient support programs, research facilitation, and policy advocacy to improve outcomes for people with rare diseases.
Target Market
Patients with rare diseases, caregivers, clinicians and researchers, patient organizations, healthcare providers, and policymakers working in rare disease spaces
Unique Value Proposition
A holistic, evidence-based platform delivering education, direct patient assistance, research connectivity, clinical care resources, and policy influence to empower the rare disease community nationwide.
Technical Requirements
Not specified in content
Pricing Model
Not a product with standard pricing; funded through donations and partnerships; includes donation options (Donor-Advised Funds, Stock, Planned Giving) as noted in site content
Companies Solving Similar Problems
Based on matching: problems solved, target roles, key features, industries
Y Combinator
Y Combinator helps startups make something people want by providing early-stage funding, mentorship, and a strong network.
Bain & Company â Global Management Consulting Services
Bain & Company provides management consulting servicesâadvising leaders on strategy, marketing, organization, operations, IT and M&A across all industries and geographies.
Dashlane
Dashlane provides password management and credential protection for enterprises, businesses, and individuals.
Wonderboy Creative
Wonderboy Creative provides web design, digital marketing, and SEO services to help businesses attract more customers and enhance their online presence.
EY
EY provides consulting, assurance, tax, and transaction services that help solve their clients' toughest challenges and build a better working world.
Get More Profiles Like This
Join 2,000+ professionals getting weekly sales intelligence updates from GoAgentic
Ready to Transform Your Sales Pipeline?
Join 700+ sales professionals automating outreach with AI.
Start Free Trial
No credit card required